On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.
Friday, May 13, 2011
Lucky # 13
It is seven o'clock and I am watching the last of Phoebe's new cells drip through her IV tubing. We were moved into a clean insolation room today, a room that had been scrubbed down from floor to ceiling the day before. Phoebe too, was scrubbed down, she was given an antibacterial bath, wrapped in a clean sheet and moved to her new room. Jon and I spent the following half hour, scrubbing Phoebe's toys, books, and anything else that we would be bringing into the room. Then we put on yellow gowns to further prevent spreading germs that might be on our clothes and joined Phoebe. She will stay in this room until she engrafts and starts to make new cells, and that can take as long as 4 weeks. During the coming weeks, every precaution will be taken to protect Phoebe from developing an infection as without a functioning immune system, even the tiniest cold can be very serious. Thankfully we still have a very large window with a view, so Phoebe will get to see some more of her new city.
After an anxious hour in the new room, Phoebe's nurse came in carrying a red plastic cooler. She unpacked Phoebe's new bone marrow; which looked just like a bag of blood, but to me appeared to be glistening. A small but brilliant bag of beautiful new cells. The transplant took about five hours and worked just like a blood transfusion. Phoebe slept through most of it, but when she was awake she was eager to explore all of the new tubes and wires that she found attached to various body parts. Stickers on her arms and chest to monitor her heart rate, a red light on her toe to keep track of her oxygen levels, a blood pressure cuff on her leg to measure her blood pressure every 15 minutes, and of course the IV tubing carrying her precious new cells.
Earlier this morning, I spent some time reading messages of hope sent to Phoebe and us from her friends and family. It means so much to us to know that so many people have been thinking of her and sending her strength and positive thoughts and prayers throughout her journey and especially today. We have often said that we think Phoebe is wise beyond her months and that she knows exactly what is going on. Sometimes when her doctors come in to talk to us she looks at them and listens intently as if she understands exactly what they are talking about. In the same way, I think that she can sense all that is out there waiting for her, all of the love and support being sent her way and it gives her strength. We are so grateful for all of this positive energy that she can most definitely feel, and also for that one person somewhere out there in our big world who one day decided to register to be a bone marrow donor. To that wonderful stranger, we will be forever thankful.